Wheezing

Please pray for Grant's health. Yesterday he started coughing and making a weird wheezing sound. We wrote the coughing off as acid reflux and the wheezing as snot. Today he threw up twice and is not eating well. His cough and wheezing continue. I kept hoping it would go away and didn't deal with it until after the doctor's office was closed. After speaking with the cardiologist at U of M he thinks we are fine to wait until morning to take Grant in as long as we monitor his oxygen levels etc. throughout the night.

Thank you TAPVR parents

I recently joined a few support groups for parents of children with heart defects. My name must have been given out today because I've received an outpouring of emails, phone calls and blog comments. I am sitting here with tears pouring down my face after reading the comments from my last blog. Even on our best days (like today) I still feel so alone and different than other parents. But, after reading the comments I feel such a relief. Others have gone before me and made it through. I look forward to talking to each of you TAPVR moms and learning from your experience. Thank you for reaching out to me. I just read the following poem on the website of another TAPVR parent and it really spoke to me, so here it is:


I have been your mother...
Long before you came...
When I first heard your heartbeat...
And thought about your name...
When I looked up at a monitor...
And watched you move your hands...
I thought...hey I'm your mommy...
And I started making plans....

I didn't plan for anything....
Except...the life you'd live....
The cute outfits we'd dress you in...
And all the love we'd give...
But life..it holds no promises...
This wisdom... I impart...
Life's most important lessons...
Are those learned from the heart...

Now everyday...when I wake up...
I say a little prayer...
Lord, watch over my child today...
And let him know your there.
Give me the chance to show him...
What it means to be part...
Of this world we live in...

This is a mother's heart.

I watch my child growing up...
Each day brings something new...
Most people can't imagine...
All the things he has been through...
The scar that runs right down his chest...
Can't easily be missed...
I can no longer doubt it...
Miracles exist...
I have loved this child Lord...
Right from the very start...
And I will remain hopeful...

This is a mother's heart.

Sometimes... it is not easy...
And faith becomes my guide...
For we live in the present...
Hoping... time's on our side...
They tell me that my child is...
A "medical pioneer..."
But surely these are not the words...
A mother hopes to hear...
Most mother's envision that their child...
Will be kind, and successful, and smart...
I picture a thousand tomorrows...

This is a mother's heart.

I see him playing in the park...
And swimming in the pool...
I see him grasping my hands tight...
On his first day of school.
I see him chasing fireflies...
on a starry summer night...
I see his life before me...
He is precious in God's sight...
As I imagine all these things...
My mind can almost chart...
The well-laid plans I have for him...

This is a mother's heart.

And if the time should ever come...
That I must let him go...
Please help me to accept the fact...
That I can't watch him grow...
My blessing...my sweet miracle...
His life...like precious art...
Each memory...a brush stroke....
on the canvas of my heart.

I have been his mother...
Right from the very start...
Nothing can ever break this bond...
This is a mother's heart.

Author: Stephanie Husted

Our best day yet

We had such a great day today! It began at 1:30am when Jim rolled over and said, "Did you feed him?" (We have still been getting up every 3 hours in the night to feed Grant due to calorie issues and it had been 5!) We must have accidently turned our alarms off. Even though we'll have to wait a few more weeks until Grant gains some weight to do this again, it felt great to know that Grant is capable of sleeping 5 hours in a row and it sure was a treat for the two of us!

We spent the morning putting together our jogging stroller, then all three of us bundled up and went for a jog together. When we got back Grant took half of a bottle fully awake. We are thanking God that Grant is getting better every day!

Just chillin'

The twilight zone

Well, we've figured out how to feed Grant. We have to catch him while he is in the "twilight zone" as we call it. It is about 5 minutes before he falls asleep. He is too tired to fight the bottle and he'll chug it down. We know this is not a long term solution, but at least for now he is getting his needed calories. We are still thinking that his whole problem is psychological because he eats so well while sleeping and puts up such a fight while awake. I love our occupational therapist and one of her two days each week is going to be spent on teaching Grant to associate eating with positive things. She comes today at 4pm.

Battlefield of the Mind

Our feeding experiences with Grant are up and down--some are easy (15 minutes of peaceful bliss) and some are really tough (2 hour marathon last night). Remember our marching orders from the doctor--he must eat in order to heal! So we have to do what it takes to get him to eat beyond what we might normally do if he weren't recovering from his surgery.

The good news is that his behavior has been markedly different since the breakthrough a week ago (see March 1st & 2nd posts). It seems to us that his body is indeed all better--he isn't in pain when he eats, the acid reflux is gone (or in-check) and he isn't throwing up at all. That has been consistent since last week. However...it appears that his mind hasn't yet recovered--he has been conditioned to believe that eating causes him pain, even though it no longer does. So when he is awake and alert, feeding is a war 7 or 8 times out of 10. When he is real sleepy and doesn't realize the bottle is in his mouth, he calmly chugs his full feeding lickity-split.

So please pray that Grant would un-learn his bottle beliefs so he could begin to eat in peace.

Thanks for all of your continued support and prayers! We think we're in the final rounds of this battle and we are so appreciative of you for sticking with us the past 3 months.

Grant's feedings

We're having some trouble with Grant and his feedings again. I'm too tired to blog it all, but please be praying for us. We just got back from the GI doctor and Grant has dropped to the 25 percentile in weight. We have a new medication and some new formula to try.

Getting stronger!

12 week picture

God is Good

Grant does not seem to be in any pain while feeding. God is so awesome. He really did heal Grant!

Canceled scope

Yesterday a friend called up and specifically told me to put my hand on Grant and declare him healed. He was asleep in his swing, so I got off the phone and went over and did that. When he woke up I got out a bottle, ready for a food fight like we've been having all week. But, for the first time in so long Grant took the bottle in my arms (he usually only lets us feed him in his crib), peacefully and happily. It was awesome. For his next 5 feeds Grant drank his bottle with relative ease.

So, early this morning I paged the GI doctor and told him what happened. He made the decision to cancel the scope. It was so exciting. Grant was doing great. Then, as the day progressed Grant started to refuse the bottle again and was eating less than half of what he did yesterday.

We are very confused by this and are not sure what God is up to. But, we feel peaceful that Grant did not have the scope today.

Upper GI work up

Well, the medicine we started yesterday for the esophagus spasms didn't work. Grant had a miserable night. So, this morning we went to Beaumont for an upper GI work up. They watched food travel its way through Grants body. They didn't find anything wrong, so tomorrow at 8am he will be scoped and get a biopsy or two taken from his insides. Please pray:
1. That Grant will recover quickly from this proceedure
2. That they can figure out what is wrong with Grant
3. That Jim and I stay healthy and hopeful

A possible fix

We just got back from the GI doctor. He thinks Grant has one of two things going on. Either Grant is having spasms of the esophogus or he has ulcers on his esophogus. The doctor is going to treat him for the spasms first and see if it helps. If it doesn't (the medicine should start working immediately), then the doctor will have to scope him, which means Grant will be in a lot of pain for 48 hours afterwards.

The danger in this medicine is that they don't like to give it to heart patients because it speeds up the heart rate. Please pray for Grant that his body takes to this medicine.

The bottle battle

Today was our worst day with the bottle yet. Grant is back to screaming when even his "favorite" bottle comes near him. I tried feeding him for over an hour and now Jim has put in another hour. At this point we would normally call it quits and try again later, but he's had so few calories today we feel like we should keep going so he stays hydrated. Please pray for us and that God would grant us another miracle.

11 week pictures

In Need of a Bottle Breakthrough

Please pray that Grant would take his bottle with ease. It's been 2 weeks now that his feeding tube has been out and although Grant's skills have improved, it is still a daily battle. I long to hold my child in my arms, have him look up and me and peacefully suck on his bottle. This seems like such a minor thing, but it would make such a difference in our daily lives, both physically and emotionally.

As I petition this request to God I must also thank him for the wonders He has already done in Grant. I looked up a blog yesterday of a sweet infant we met while in the hospital, who was supposed to go home this week, but she died the other day of an infection. My heart breaks for little Sophia's family. Please pray for them. And thank God with me for healing Grant in all the ways He has already. In the midst of the daily struggle to feed Grant pray that I continue to have a greatful heart.

Feeling sick

I have been fighting a sore throat for days now. I woke up today feeling a lot worse. Please pray that I would get well quickly.

Medication update

I spoke with Grant's cardiologist today to update him on Grant's current formula intake as it relates to the medication we temporarily stopped. Grant is now up to about 500ml in a 24 hour period, where as they want him to be over 700. (Can you believe just a week ago he was only eating something like 180 in a day?! He is totally improving!)

The doctor asked a bunch of questions, including how Grant's breathing is. Because we have the machine that monitors his beats per minute at home I could tell him exactly how Grant's breathing was. (To put this in perspective: When Grant came home from the hospital his heart beat about 170 times per minute. Now it is down to 140.) So, Grant's heart today is not having to work as hard as it used to. The doctor thinks that possibly the medication was making him dehydrated and thus causing his heart to work harder. So, the conclusion is that we do not have to put Grant back on the medication (unless he starts having breathing problems). The way that God works is so cool. We never would have known this if Grant took the bottle right away and did not start to get dehydrated, which then caused us to stop the meds which drain fluid from his body.

So, the good news is that we have two less medications to give Grant, his heart appears to be doing better and he is still in the 50th percentile in terms of weight, even though he lost a pound this past week.

Current prayer requests:
1. That Grant would improve his feeding skills
2. That Grant would take his bottle from someone besides mommy and daddy so we can have a little break from our marathon feeds. :)
3. That Grant's lungs would heal completely.

A visit from Grandma Niedzinski

Jim's flew in to help us for a few days. Perfect timing.

One happy baby

Grant is doing so much better. It is obvious that his throat is healing because he is smiling a ton these days.

His bottle skills are improving, but he still has a way to go. Each feeding takes 1-2 hours and we have to feed him every 3 hours, even in the middle of the night.

Please pray for endurance for us and that Grant would pick up the pace in his feeds. He's still not up to his recommended amount of formula, so he's not gaining weight like the doctors would like, but he's not losing weight anymore either. Because he's still not eating enough, he's not back on all his meds. The doctor didn't want him off longer than 48 hours and now it's been a week, so I have a call in to the cardiologist to ask him what we should do.

Grant continues to do well off oxygen during the day. :)

Thank you to all of you who continue to bring meals, grocery shop, and help with other various tasks. This really allows us to focus on feeding Grant. We couldn't do this without you.